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#1
01-16-2009, 07:27 AM
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Hi there and hello I live in West London in the UK I'm 32 and I was diagnosed with epilepsy when I was 15 I have tonic clonic, vacant siezures I also have what my specialist calls myclonic twitches. I can have my siezures at any time I don't get any warning I have had siezures in my sleep and awake I haven't been siezure free for 6yrs my last ones was last weekend 10th January when I had 2 in as many hours The longest I have been siezure free in the last 6yrs is 9mths my doc has tried various different medications but with no success at the mo i'm taking. He has said that my epilepsy is very complex so very difficult to control 1500mg Keppra twice daily 350mg Lamictal/Lamotrogine twice daily 10mg Frissum/Clobazam in the evening My epilepsy doesn't usally get me down I try to laugh and joke about it but just recently i've started to get depressed with it as I just don't see the light at the end of the tunnel anymore. My siezures are usally brought on or made worse by stress, I have a lovley wife who has stood by me we also have a son who is now 18mths old.     |
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#2
01-16-2009, 07:56 AM
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| Hi Dano, welcome to the forum.  There is always hope. Make yourself at home here. 
__________________ New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads. Would you like to help support this forum? |
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#4
01-16-2009, 09:40 AM
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| Hey Dano - We have some awesome alternatives here that are having encouraging results. Hang out with us, and you just might learn something new. Welcome
__________________ Robin Neurofeedback - Rebecca's Story Feedback Matters- blog Knowledge is power and knowledge shared is power multiplied. -- Bob Noyce |
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#5
01-16-2009, 11:10 AM
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| Hi Dano Welcome to CWE Aha another UK-er, I am from Norwich. This forum is very friendly and has a lot of great info!!!!! Take care The Crazy Monkey
__________________ "Be What You Are" - Stiff Little Fingers Lyrics |
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#6
01-16-2009, 11:26 AM
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| Hi Dano! Welcome to CWE. As you can see, a friendly group. I was wondering...have you ever tried to see if there's anything specific that might be triggering your seizures? If not, then you might want to try keeping a journal. In it, write down everything you eat and drink (when and how much), how many hours of sleep you get each night, any stresses your under, any odd feelings (deja vu, odd smells or sounds, migraines, etc...), if you're a female when your period is, as well as when you have seizures what kind and approximately how long it lasted as well as what you were doing right before it happened. Then after a month or two, go back and look at the days you had the seizures and the 2-5 days prior. Do you find a pattern? Like do you have seizures only when you haven't had enough sleep or are other things triggering them...like certain foods (yes, for some here certain foods can trigger a seizure and if they avoid it, they're fine), smells, flickering lights, heavy breathing, etc. Then, you can take this journal to your doctor. It might give him more info that will help him in your treatment. I hope this helped. Feel free to chime in, ask questions, or just vent in the padded room. Heaven knows E can be frustrating. |
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#7
01-16-2009, 12:19 PM
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| Welcome Dano When my son was diagnosed with epilepsy, I was happy to learn that there were many other alternatives to medication. The first few doctors he saw didn't give us any hope, but I kept searching. We're now controlling his seizures through nutrition and other natural alternatives. Hang in there. One day you just might be able to say that you've been seizure free for more than 9 months! |
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#8
01-16-2009, 03:14 PM
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| Originally Posted by skillefer  :
Thanks for the kind welcome everybody Skillefer I've have kept a journal before but it has not been of any real help we have narrowed down some of the things that have caused my siezures in the past things like Stella Artios lager Garuntees a siezure within hours of having the first mouthfull Stress brings on siezures but it takes a bit of time Triedness again it takes a bit of time And the flu jab within a couple of weeks Having a cold or flu |
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#9
01-16-2009, 04:16 PM
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| Hi Dano! Okay...then it sounds like some of your main triggers are lack of sleep, stress, and when your sick. The lager might indicate a food allergy to hops or yeast. Food allergies can trigger seizures. Or, it might be that you stay up late partying, don't get enough sleep, and then the alcohol just pushes you over the brink. Or, it could be that you aren't eating regularly enough, or it could be that your hypoglycemic and your body doesn't handle sugars well...in which case you'd need to make some dietary changes and start eating 6 times a day. It seems to me that the journal has helped you figure out some of your triggers...and that's good. But you have to ask yourself, was it detailed enough? If so, then is there anything that's changed in the last 2 years? Have you gained or lost weight? Are you in a more stressful situation? And then, you have to consider that like many of us, you might just be one of the ones whose seizures seem to go away, only to come back. And if that's the case, then be thankful for the 2 years that you had seizure free and look at all the info available on alternative treatments and medications. See if there are any alternative treatments that you'd like to use to either supplement or replace your medication. But remember, knowledge is power. So write down your questions and take your journal with you when you go to see the doctor. |
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#10
01-18-2009, 01:12 PM
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| Skillefer I was talking to my wife about what you have said about sugar intake and we both said the same thing could it be that i'm not getting enough sugar as I don't have sugar in my tea and I drink quite alot of tea I don't really drink coffee but when I do I have sweeteners in it and not sugar any fizzy drinks I have the diet drinks i.e Coke Zero anything like orange or blackcurrant squash we buy the reduced sugar types with alcholol I mainly drink Jameseon whiskey again with a diet cola I don't really drink lager and I have done this for quite a few years now it might even be 6 or 7 years now could it be that my meds might not be getting along with some of the sweenteners that are being used in these products  I might write down all the sweenteners that are used in my drinks and see if any of my meds clash |
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#11
01-18-2009, 01:47 PM
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Ahhhhh BUT here's another biggie to consider. The diet drinks have ASPARTAME in them, which is a neurotoxin/excitotoxin. And for us E people, a no-no. Why don't you have a look around at some of the diets here on the site? Personally, I use the GARD diet, and I have had sooooooo much more success with controlling my seizures that it's amazing. And, I eat healthier. Who can complain about that? Lager, which you and Skilly both brought up earlier, has yeast in it and hops, too.......something that is avoided in the GARD diet. And when I have beer, trust me, I can tell a difference in the activity going on. GARD DIET LGIT DIET MODIFIED ATKINS DIET Check out these 3 links. They will give you a LOT of information. There is another link to the ketogenic diet, but that generally works on children under the age of 16. Also, this link will lead you to Zoe's Corner....lots of good information to be had there, too. She just started it, but she is a walking encyclopedia.... ZOE'S CORNER Hopefully this will all help, too. Meetz |
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#12
01-18-2009, 02:04 PM
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| Originally Posted by Dano :
You might checkout the book:
__________________ Robin Neurofeedback - Rebecca's Story Feedback Matters- blog Knowledge is power and knowledge shared is power multiplied. -- Bob Noyce |
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#13
01-18-2009, 04:31 PM
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| Welcome to the forum. You'll find some good support and advice here! |
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#15
01-22-2009, 01:05 PM
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| Also, forgot to add this...don't forget that your body changes all white breads, potatoes, and starchy foods like rice and chips into sugar. So even if your not eating sugar per se in the form of sugar and sugary cereals, if you eat a lot of bread, pasta, rice, and potatoes, or chips, you are still getting loads of sugar. I know...frustrating. The reason I mentioned the food, was because I have hypoglycemia. Which means if I eat a donut, my body overeacts to the sugars and sends out lots of insulin. Then my blood sugar levels crash. And all of this can take about 30 min. If my blood sugar hits 60, it can trigger a seizure. So I have to make sure that I eat 6 times a day, and that if I have a starch that I also have a protein to go with it. If not, then I know that within an hour, my body will tell me that I'm hungry again, and my hands might start trembling and possibly even a seizure. So try to look at your diet closesly and be honest. Do you eat out alot? (Lot's of fast foods have neurologist toxins in them. Even the salads...it may be fast food, but it's not safe food.) So give your diet an honest evaluation...Also, if you have anyone in your family that has diabetes, your chances of developing hypoglycemia are way high. So check it out. Better to take care of it now, then have to deal with diabetes later. |
